Naperville mother of three, Dayna Abraham, used to describe each of her kids in the roles they filled for their family. Her oldest, who has special needs, was the drive that pushed her to be a better mom. Her dependable middle son was the glue who helped hold the family together in rough patches. And her youngest was the joy who made everyone smile no matter the situation.
Yet Abraham realized that she was putting each kid in a box. “I wasn’t connecting to who they really were and that everything was related to the struggles we were having.”
Something had to change, she says.
“Now we connect with each of our kids at least once a month and they get to do something special that’s their day and with each parent.”
Caring for a child who emotionally, physically or developmentally strays from the “norm” can come with lots of stressors on the whole family. The idea of having a balanced life can feel near to impossible.
“It takes a village to be able to give the necessary care and support to a special needs child,” says Erilda Borici, licensed clinical professional counselor at North Shore Pediatric Therapy. “This often leaves parents depleted and limited in their ability to meet all the needs of their other children or their partner.”
Raising a child with special needs can also come with financial barriers, she says.
“Many families find themselves draining their saving account to pay for therapists and doctors’ visits. This adds an additional challenge in being able to justify doing fun activities with the rest of the family and prioritizing self-care,” Borici says.
Set aside time
As hard as parenting a child with special needs can be, it’s important that parents address the unique needs of all their children. Borici suggests that parents make special dates with their typically developing child within the context of their schedule.
“If you are going to the grocery store, bring them with you and let them know that this is a special trip and they can help pick out different foods they might like. Ask open-ended questions that allow them to share details from their life, and encourage open dialogue about any feelings your child might have about their special needs sibling,” she says.
Life with a child with special needs involves tons of advance preparation.
Alison Liddle, owner of M Street Pediatric Therapy, recommends carving out of time in your schedule not only for the special needs child, but for other children in your household as well.
“Have a standing date once a month with your other child,” suggests Liddle. “If needed, recruit family or friends to organize childcare for your special needs child to ensure the monthly time with your other child happens.”
“It is also important to do the little things. Remind yourself to take 15 minutes to bake brownies together, create a special project they enjoy or let a sibling stay up late while the other child is sleeping for an evening game night,” says Liddle.
As a mom of five children including her youngest with Down syndrome, Kelly Simkowski of Oak Park understands the struggle of finding balance and time for each family member.
“There is always someone who wants or needs something,” says Simkowski. “I’m not really able to take the time to spend long amounts of quality time with each kid, so I’ve tried to figure out something special that each kid likes and capitalize on that when I can.”
“One kid likes back scratches, so I try to wake him up with a back scratch when I can. One kid still loves to get her hair brushed every morning, so I’ll wake her up to do that before I leave for work. One kid loves to snuggle in my covers, so we do that for a few minutes every morning before I get out of bed. Little stuff like that helps me stay connected to them and gives us a few minutes of quality one on one time.”
“For me, treating each kid as an equal, including the special needs child, is very important,” Simkowski says. “I try every day to do the same amount for each child so it doesn’t make one jealous or resentful of another.”
Another way to gain balance is to consider inclusion, according to Courtney Schweiger, regional manager at Total Spectrum Care.
“Consider how can you include your family members in the activities that you already have them involved in,” Schweiger says. “Can siblings help the child with special needs during therapy? Can therapy for that child be taken to the community, such as to your other child’s baseball game? Finding ways to balance activities while including the other children is my definition of ‘work smarter, not harder.’”
And remind yourself you don’t have to do it all.
“There are so many therapies that a child with special needs can be placed into, but does not necessarily need every therapy under the sun,” adds Schweiger. “Prioritize the therapies you need now for your special needs child.”
Then apply that idea to each child in the house.
“What does each child need right now? We work so far ahead to plan for and involve children in so many activities, but this can be overwhelming to you and the children. Focus on maybe one activity, sport or group at a time for each child and during those activities, put the focus solely on them,” Schweiger suggests.
Put your mask on first
Parenting kids with special needs carries with it a unique set of responsibilities, stressors and rewards. While it might seem obvious that self-care is essential, many parents put themselves last.
“Parents need to think of the airline reminders to ‘put on our own oxygen mask first.’ It’s crucial for special needs parents to find some time to make their self-care a priority,” says Borici.
“Attempt to establish a non-negotiable ‘me time.’ This time can be set aside to do something that you enjoy, whether it’s meditating, a bath, reading a book or exercise. Letting the rest of the family know that this time is just for you can model self-care for everyone,” she says.
Abraham admits she has not always remembered to take care of herself.
“There were times I wasn’t eating right or drinking water, wasn’t sleeping and wasn’t seeing friends or talking to people outside of therapists,” says Abraham. “I was isolated, lonely and miserable. Now I know how important it is for me to fill my cup first.”
It’s helped for her to plan to get up before anyone else in order to get 30 minutes to herself.
“I make my coffee, I sit down, I write what I’m grateful for from the day before and I plan my day. It gives me that big deep breath so that I can take on anything that happens that day,” she says.
Another way to care for yourself as a parent is recognize that it’s OK to ask for help.
“When there is a child in the family who requires much of the family’s time and resources, it’s easy for others’ needs to not feel as urgent,” says Liddle. “It is important to be able to ask for help, know it is OK to ask for help and to identify a tribe you can ask for support when you need it.”
It’s also crucial to know that balance may be different to each family, and isn’t always a 50-50 thing.
“When people think of balance, they think of everything being even and everything working out perfectly at the same time,” Abraham says. “Like spinning 10 different plates on 10 different poles and honestly that is impossible.”
Abraham embraces a different reality.
“Instead, our family tries to create a lifestyle that allows for that ebb and flow of being able to put our attention towards something that is pressing and important during a short amount of time and letting the other plates take care of themselves for awhile. We find our focus, we make priorities and we make connection number one for our family and everything else falls into place.”
Megan Murray Elsener is a Chicago Parent contributor, freelance writer and mother of three.
This article appeared in the summer issue of Special Parent. Read the rest of the issue.